OP0121-HPR THE SELF- AND SHARED-MANAGEMENT OF JIA: A NEW FRAMEWORK FOR RESEARCH, POLICY, AND PRACTICE
Authors: S. Stones, V. Swallow, L. Milnes
Journal: Annals of the Rheumatic Diseases (2022)

Background Juvenile idiopathic arthritis (JIA) is a complex long-term condition requiring lifelong management [1]. Children and young people (CYP) should be empowered to self-manage their health and wellbeing (H&amp;W) from diagnosis [2], while families should be supported in their shared-management role [3]. Self- and shared-management (SSM) interventions can be used to develop SSM capacity [4]; however, few studies have explored SSM in this population. Objectives To develop a framework to promote JIA SSM, applicable to CYP, families, and professionals involved in their healthcare, wellbeing, and education. Methods Using a realist approach [5] and underpinned by the individual and family self-management theory [6], evidence syntheses and a qualitative study were undertaken to identify, test, and refine a series of theories promoting JIA SSM. The theories developed and tested were referred to as ‘question theories’, akin to programme or intervention theories, written at a middle level of abstraction to map theory for future research. Twenty stakeholders were interviewed using a teacher-learner cycle approach. Data were analysed using hybrid deductive-inductive thematic analysis and were integrated into a framework promoting JIA SSM at a higher level of abstraction. Results Six refined question theories outlining the mechanisms by which the SSM of JIA is likely to transpire, and the different contexts under which interventions achieve their desired outcomes, were developed, and assimilated into a new, JIA-SSM framework. Within the framework, four levels of context related to SSM were identified. These were at an individual and interpersonal level of CYP, families and professionals, and at institutional and infrastructural levels across health and social care, education, and voluntary sectors. Individual healthcare plans can also act as shared-management tools to facilitate communication between CYP, families, and professionals across healthcare, wellbeing, and education. Conclusion The JIA-SSM framework encourages a shift towards a multi- intervention, multi-disciplinary, multi-agency approach which works with CYP and families in equipping them with the knowledge, skills, and behaviours to competently manage their H&amp;W. Further research is recommended to apply and validate this framework in practice, to aid future design, delivery, evaluation, and implementation of SSM interventions in JIA. References [1]Gidman W et al. The Humanistic and Economic Burden of Juvenile Idiopathic Arthritis in the Era of Biologic Medication. Curr Rheumatol Rep 2015; 17:31; [2]Tong A et al. 2012. Children’s Experiences of Living with Juvenile Idiopathic Arthritis: A Thematic Synthesis of Qualitative Studies. Arthritis Care Res 2012; 64:1392-1404; [3]Smith J et al. Parents’ Experiences of Living with a Child with a Long-Term Condition: A Rapid Structured Review of the Literature. Health Expectations. 2015; 18:452-474; [4]Lindsay S et al. A Systematic Review of Self-Management Interventions for Children and Youth with Physical Disabilities. Disabil Rehabil. 2014; 36:276-288; [5]Pawson R and Tilley N. Realistic Evaluation. Sage 1997. [6]Ryan P and Sawin KJ. The Individual and Family Self-Management Theory: Background and Perspectives on Context, Process, and Outcomes. Nursing Outlook. 2009; 57:217-225. Acknowledgements The authors would like to thank everyone who participated in this study. This study was funded by the University of Leeds as part of a School of Healthcare PhD studentship. Disclosure of Interests Simon Stones Consultant of: SRS has served as a consultant for 67 Health, Ampersand Health, Envision Pharma Group, Janssen, On The Pulse Consultancy, Parexel, Sheffield Hallam University, and the University of Aberdeen., Employee of: SRS is employee of Envision Pharma Group and owns stock options in Envision Pharma Group., Veronica Swallow: None declared, Linda Milnes: None declared